ME: DIRE, DEBILITATING IMMUNOPATHIC RELAPSING ENCEPHALOMYELITIS

by Helen Borel,RN,MFA,PhD

   After considerable research of the scientific literature, plus two decades of observing my own relapsing ME pathologies, I finally fully grasped the actual factual nature of this truly DIRE illness.  Variously
known as Chronic Fatigue Syndrome (CFS) in the U.S., Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) in the U.S., Low Natural Killer Cell Disease in Japan, and Myalgic Encephalomyelitis (ME) in the U.K., Australia, Canada, Sweden, the Netherlands, Germany, other European countries, and in even more countries worldwide, confusing patients and doctors alike, I decided on an
even more specific descriptive name for this disease:

   Debilitating Immunopathic Relapsing Encephalomyelitis.

   "Myalgias" may be present in some CFS/ME/DIRE patients, but so are many, many other signs and symptoms.  I chose "Debilitating Immunopathic Relapsing Encephalomyelitis" because this group of words covers the panoramic gamut of what this disease's pathologic process is doing to the patient. And, it is truly DIRE:
  ~ Incapacitating Debility
  ~ Immune pathology
  ~ Occuring in Relapses 
  ~ Inflaming the Encephalon and Myelin Sheath
     ...And the acronym DIRE describes the disease as severe!

    Dormant Virii Capture Vulnerable Immune Cells
    We're not fully certain, yet, but it is presumed that one or more dormant virii - awakened when the immune system is weakened
by some other infection, toxic assault, as yet unknown etiologic event, or a virulent combination thereof - are participants in the dire disease process widely known as ME and CFS.  Within the immune cells, they replicate using the cell's own deoxyribonucleic acid (DNA), thereby destroying the cell and its protective capabilities.

   Thus disabling one's immune cells drastically alters the biochemistry of one's immune system and its interconnections vital to other body functions.  Its subtle exactness of action and its immune chemicals, meant to attack invaders, are thereby crippled.  Immune biochemistry now goes amok because it's system's cells are now virtual viral factories, overreacting with too much of certain toxins and too little of its balancing suppressants. 

   The Brain and Spinal Cord Awash in Cytotoxins (killer cells)
   With normal immune biochemical pathways severely disrupted this way, you can see how this process explains the flooding of the body, especially the brain and spinal cord, with excessive levels of certain neurochemicals and cytotoxic immune chemicals due to the ruptured immune cells' panic reaction.

   In other words, when a vulnerable immune system is attacked by normally dormant virii, it presses the red alert panic button.  The Central Nervous System - your brain and spinal cord - gets this twisted, pathologic message and responds with its own matching bizarre biochemical overreactions.

   The result is that vital functions are ultra-suppressed that shouldn't be, that other vital functions are hyper-stimulated that should not be.
The outcome is the disease you are, or your patient is, suffering.

    Brain and Spine on Fire!!!
   The goals must be to treat, symptomatically, the inflamed brain and
myelin sheath. 

   Physicians, please remember that oral and rectal temperatures, usually in the normal range even during horrendous DIRE relapses,
DO NOT REFLECT the febrile climate of the Central Nervous System during ME, CFS, DIRE relapses. Thus, do resolve to treat
the presumed encephalitis brain fevers that are occurring during
relapses, that "hotheadedness" that probably is the initial event occurring as a DIRE remission transforms into a DIRE relapse.

   Sadly, right now, some patients experience few, if any, remissions.  They are living lives of one continuous, neverending relapse. Thus,
making patients and doctors oblivious to the fact that this is a relapsing/remission disease that should be diagnosed and aggressively treated SYMTOMATICALLY as early as possible to prevent this dire state of chronicity.

  ~ We must minimize the severity of each relapse 
  ~ We must aim toward the elimination of relapses altogether
  ~ Or, at least, we must head toward the patient suffering fewer
     and fewer relapses with increasingly longer and longer periods
     of remission.

   Until, one day, the ME, CFS:DIRE patient can live a normal life
again.
  
(c) Copyright 1992 to 2018 by Dr. Helen Borel. All rights reserved.